Giant Potholes in the Road of Life

There is a road not far from my house that has the worst potholes in the world. I'm talking about jaw-breaking, brain-rattling caverns that shock me every time I drive over them. Even though I try to avoid them, they are impossible to miss. The funny thing is that the road is in a really nice area with beautiful trees and charming homes.

Okay, maybe I'm overstating the size of the potholes...a little.

To outsiders my life appears perfectly lovely. I have a supportive family, a great job, a cute cat, a home, and look healthy on the outside. The reality is that I've hit a giant pothole in my personal life, which has shaken me to the core.

My husband and I recently divorced.

We separated a few months ago, and the divorce was finalized last month. When I got married in 2005, the D-word was never an option for me. I believed I would spend the rest of my life with this man. I would get healthy, and then we would have children and grow old together.

We were supposed to grow old together.

Unfortunately, the odds were against us. From what I've read, the divorce rate for people with chronic illness is higher than that of healthy people. My husband also brought his own mental and physical issues to the marriage, which compounded our challenges.

Suffice it to say our marriage is over.

What makes the timing of the demise of our marriage so much more painful is that I'm the healthiest I've been in a very long time (I'll write about it in a future post), our careers were going well, and we were finally reaching a point where we didn't have to worry as much about our finances. The future was looking bright.

Unfortunately, the future I envisioned for myself is gone.

I'm now in the process of regrouping and dealing with my grief. I'm seeing a psychologist to sort through everything, my family has been amazingly supportive, and I'm taking care of myself. I think I've been doing quite well under the circumstances, though I'm not entirely sure how much is denial and how much is me actually handling things.

Only time will tell, I suppose.

My mom bought me a magnet that I keep prominently featured on my refrigerator so that I see it every day. It says:

Everything will be okay in the end. If it's not okay, it's not the end. ~Anonymous

What's great about the road with the terrible potholes is that once I get through the really rough patch, there is a stretch of freshly repaired road. There are no potholes in that area, and it's a smooth drive for a while.

I'm looking forward to the next smooth part of my Road of Life. For now, however, I'm working on getting past this darn pothole.

Trips to Immunologist and Hematologist

In case you're not a regular reader or it's just been too long since I've talked about it, I have been on a mission in recent years to get answers.  I've gone from specialist to specialist for three main reasons:

1. to seek relief from something chronic (e.g., asthma, allergies, IBS, PCOS, etc.),
2. because a doctor/specialist referred me, and/or
3. to rule out conditions or find out if there is something wrong with me that can be treated...just in case I don't really have CFS/ME.

A lot has happened since my last real post. I've seen an immunologist and a hematologist in recent months, though not much came of the visits.  Well, that's not entirely true.  Something did come of the hematologist visit, but you'll have to read the rest of the post to find out (or you can just skip to the end). 

First, the immunologist.  I decided to see an immunologist to rule out major immune system problems because I've had problems in the past with healing (e.g., complicated tonsillectomy, complicated UTI), as well as unusual reactions to different things (e.g., drug allergies). 

I didn't realize how hard it would be to find an immunologist who saw adults.  Typically, doctors in the US who are allergists are also trained in immunology, but I wanted someone who focused on immunology first and allergies second.  I was hoping the doctor would have enough experience that he or she could spot unusual or less common conditions in adults.  Most of the doctors in my area who called themselves immunologists worked in pediatric departments of hospitals and only saw children. 

After searching high and low, I finally found a doctor who used to be a pediatric immunologist at a hospital before starting his own medical practice.  He now sees children and adults.  His office is about an hour away from my house, but I felt the visit would be worth it.  When I went to see the doctor, he took a thorough medical history and listened carefully to everything I had to say.  He took his time with me.  I think the appointment lasted well over an hour! 

The doctor explained that from my medical history and the way I described my problems, he did not think I had a significant immune system problem; however, he said something mild could be possible.  The doctor ordered a battery of tests, from the usual CBC to more specialized tests on my immune system that I'd never had done before. 

I won't keep you in suspense.  My immune system appears to be normal.  All the tests came back within normal parameters -- except for my red blood cells.  The abnormal results were expected because I have thalassemia minor; I am a genetic carrier for the thalassemia trait, which is a type of anemia.

Though I had told the immunologist that I have thalassemia minor, he was concerned about my blood test results and strongly urged me to see a hematologist for a deeper look at the way thalassemia minor might affect me.  The immunologist believed the thalassemia minor could be the cause of my fatigue. 

I was shocked because I'd always been told that thalassemia minor was symptomless. 

I made an appointment with a hematologist as soon as I could.  This doctor took a thorough medical history and ordered a bunch of tests to check out my blood and to determine what type of thalassemia minor I have.  I found it interesting that the doctor himself actually went to look a look at my blood cells with a microscope while I waited in the exam room. 

I'll spare you the suspense again.  Based on the blood test results, the hematologist said that he did not believe the thalassemia minor was causing my fatigue or other symptoms.  He said my blood cells looked good for someone with the thalassemia trait and that I was not particularly anemic. 

I was actually disappointed because I thought I was about to get answers as to why I've physically struggled for so long. 

One really good thing came from the visit to the hematologist, however.  He was fascinated by my health history and really seemed to empathize with me.  He revealed to me that during his medical training, he had once worked at the National Institute of Health in their rare diseases department. 

He said that the NIH has a program that brings in patients who have not gotten a diagnosis that adequately explains their constellation of symptoms.  The NIH runs about a gazillion tests on the patient and tries to come up with a proper diagnosis. 

The hematologist said that once I receive my nuclear DNA test results from the mitochondrial disease specialist, he would be willing to recommend me for the NIH rare diseases program if the results come up inconclusive. 

Wow!

I won't be getting my nDNA test results back for at least another couple of months, but this doctor gave me a little glimmer of hope that I might finally understand my uncooperative body.  It's important to note that there is no guarantee that I would be accepted into the program even if recommended by this doctor, but I was touched that the hematologist took me so seriously and understood my need for answers. 
 

Happy Holidays

Image from http://hellogiggles.com/hanukkah-is-not-jewish-christmas-and-other-holiday-irks

Happy Holidays!  I have many updates to post.  I hope to catch up with my blogging over the next several days.  Best wishes to you and yours. 

Mitochondrial Disease Testing Update

Image from the Muscular Dystrophy Association

This year I have been on a mission to get answers. 

My journey lead me to a rheumatologist who noticed unusual muscle weakness and suggested I see a neurologist (see It's not Lupus, but...).

I then found my way to a wonderful neurologist who specializes in neuromuscular diseases who confirmed my weakness and ordered a battery of tests (EMG, muscle biopsy, blood work, etc.).  This doctor has seen CFS/ME patients before and does not usually detect the types of muscle problems I have in them.  I then got in to see a mitochondrial disease specialist who has been working with my neurologist, suggesting particular tests and vitamins/supplements. 

Read my February, March, and April blog entries to catch up on the full story.

Last month I received my first set of mitochondrial disease testing results. It's taken so long to get results because I asked that they postpone the testing until we could better afford it. 

The tests done on my muscle biopsy sample were a mitochondrial DNA (mtDNA) analysis and a Mitochondrial Respiratory Chain Enzyme (ETC) analysis. It's my understanding that not many labs in the country perform these specialized tests.

My mtDNA analysis did not show anything of clinical significance. However, my Mitochondrial Respiratory Chain Enzyme (ETC) analysis results were abnormal. From the lab report:

A deficiency was detected in rotenone sensitive complex I+III, which meets major criterion of the modified Walker criteria for the diagnosis of a respiratory chain disorder. A reduction in complex II+III activity was also observed, but not sufficiently reduced to satisfy a diagnostic criterion of mitochondrial respiratory chain disorder. Reduced activities in complex I+III and complex II+III may suggest a CoQ10 deficiency. Mitochondrial electron transport chain disorders may be caused by molecular defects in nuclear or mitochondrial genes.

I hope the image at the top helps make this scientific jargon a bit easier to understand.  The mitochondrial disease expert I saw felt these results merited further testing. Additional muscle tissue has been sent to the lab for them to do a testing for CoQ10 deficiency.  I am also going to have a nuclear DNA (nDNA) analysis done.

I am too tired to explain the significance of these different types of tests, but here are a couple of websites that might help a little:

What Causes Mitochondrial Diseases
Mitochondrial Disorder Medical Information

Time for bed!

Part III: My Seriously Serious UTI Treatment

WARNING: Some people may find the pictures in this post too graphic because they show needles in my arm.  See Part I and Part II for background on this post. 

What should have been a simple UTI turned out to be a two and a half week adventure. The doctor(s) at the hospital decided that instead of oral antibiotics, I needed to have five more days of intravenous (IV) antibiotics. 

WHAT?!  That's a seriously serious treatment. 

In the end, I think my diagnosis was pyelonephritis, which usually means the infection has reached the kidneys.  Though the CT scan of my kidneys (and surrounding area) was clear, the Attending Physician (the doctor in charge of the Resident doctors who had been caring for me) explained that she was concerned the infection was working its way to my kidneys -- which is probably why I was experiencing a cramping pain in my lower back.  She also did not like the way I had not responded to all the oral antibiotics...thus, the IV antibiotics. 

She said a nurse would come to my house to teach me how to administer my own IV treatments and let me do it on my own if I felt comfortable.  If I didn't feel comfortable, the nurse could come back every day to help.  Wow.  It was a lot to take in.  Having a nurse go to a house to administer IV antibiotics seemed like something only really sick people have happen. 

As a parting gift from the hospital, I got to keep my peripheral IV line (i.e, an IV needle in my arm) so that I didn't have to get stuck with a new needle every day (see photo below).  Notice the fashionable green and white striped hospital gown sleeve. 

 

Sure enough, I learned how to administer my own IV antibiotics -- a surprisingly involved process.  It was a little creepy at first, but I could handle it.  The home IV was not like the kind I had at the hospital (you know, with a bag and a pole).  Instead, the medication was packed in a little balloon-like ball that used pressure instead of gravity to move the IV medication through the tubing (see photo below).  

 

Unfortunately, the IV needle in my arm didn't make it the full five days.  It slipped out of place after a couple of days, so I had to get it removed.  The home nurse tried to insert a new IV, but my veins would not cooperate (or she was not particularly skilled at inserting IV's).  She finally gave up and used a butterfly needle to administer my IV treatment (see photo below).  Because the butterfly needle could not stay in my arm day after day, the nurse had to come back each day to do the rest of my treatments. 

As a result of the myriad of oral and IV antibiotics (and despite my best effort with high doses of probiotics), I ended up with a really fun (that's sarcasm) vaginal yeast infection.  All I can say is thank goodness for prescription antifungal medications. 

I am happy to report that I am fully recovered from my first and worst UTI, though I'm now paranoid that I'll get another infection that is just as bad or worse.  Ugh.  Please send my urinary tract good thoughts.  :)
 

Part II: My Very Worst Urinary Tract Infection

Having complications of seemingly simple issues seems to be the story of my life. 

I can't just have a tonsillectomy, I have to have complications that send me to the hospital.  I can't just have typical side effects to Trileptal, I have to have an anaphylactic reaction that sends me to the hospital.  I can't just have a simple urinary tract infection, I have to end up in the hospital on IV antibiotics. 

Obviously, I've given away the ending to my UTI story. 

Most UTIs are caused by Escherichia coli (E. coli).  Since I can't seem to do anything the easy way, my infection was NOT caused by the usual bacteria.  Instead, the bacteria I had was an antibiotic-resistant Klebsiella pneumoniae.  And, of course, it was completely resistant to the the antibiotic I had been prescribed (Macrobid/Nitrofurantoin).  See below for my urine culture results:

RESULT: Greater than 100,000 CFU/mL of Klebsiella pneumoniae
K.pneumoniae
----------------
INT MIC
AMPICILLIN R > = 32
AMP/SULBACTAM R > = 32
CEFAZOLIN S < = 4
CEFEPIME S < = 1
CEFTRIAXONE S < = 1
CIPROFLOXACIN S < = 0.25
ERTAPENEM S < = 0.5
GENTAMICIN S < = 1
IMIPENEM S < = 1
LEVOFLOXACIN S < = 0.12
NITROFURANTOIN R 128
TOBRAMYCIN S < = 1
TRIMETHOPRIM/SULFA R > = 320
Legend:
S = Susceptible  I = Intermediate   R = Resistant  NS = Not Susceptible

You'll notice that there is a big R next to Nitrofurantonin, which indicates the bacteria I had was resistant to the antibiotic I had been prescribed.  The reason I did not feel better over the weekend was because my antibiotic was doing nothing!  Fortunately, the urine culture results came in on Monday, so the PA prescribed a new antibiotic that the bacteria was supposed to be susceptible to (and that I was not allergic to).

Unfortunately, I did not feel any better on the new antibiotic (in fact, I was feeling worse; pain had started to spread to my lower back), so I made an appointment with a doctor for that Thursday -- exactly one week after my symptoms started.  The doctor decided that I was not on a strong enough antibiotic, so she changed my antibiotic.  By the following Monday, my symptoms had not improved. I felt a constant cramping feeling in my lower pelvis and back; I was nauseated and running a 100-degree temperature.  By now, I'd been sick for about a week and a half. 

I called the doctor's office, and they instructed me to go to an Emergency Room rather than come into the office.  The ER?  I felt awful, but I didn't feel THAT sick.  Oh well, what could I do but follow the doctor's orders.  And just like that, my very first UTI became my very worst. 

As my husband was driving me to the Emergency Room, I commented to him that I hoped we'd be back home in time for dinner.  I figured the ER would give me some IV antibiotics and send me home that day with a new prescription.  No such luck. 

While the ER doctor did order IV antibiotics, he also wanted to keep me in the hospital overnight.  Really?!  I told the ER doctor that I felt sick, but not that sick.  He smiled and said they wanted to keep me overnight for additional tests and observation.  I thought he was speaking in code and really meant "we just want your money." 

While in the hospital, I had a CT of my abdomen and was poked and prodded by numerous doctors (Residents) throughout the night.  I had multiple blood tests, a urine test, and two IV antibiotic treatments over the course of 24 hours.  The hospital I happened to be in was a teaching hospital, so I also kept having to repeat my medical history over and over.  I got very little sleep during my stay (my snoring roommate didn't help).  I was glad that I would be going home after just one night.

Before I could leave the hospital, the Attending Physician (i.e., the senior doctor in charge of the Residents) had to review my case.  I assumed I would be prescribed some sort of antibiotic to take home.  I was right, but I was surprised by the prescription. 

I'll write more about my unusual prescription in my next post.